TEN COMMON ROADBLOCKS
WHEN
BEGINNING A HOME PROGRAM

By Sabra Gelfond Ingall, M.A., CCC-SLP

Over the past 15 years, I have worked with countless
families who have children with Autism Spectrum Disorder. I have
witnessed common challenges each family must consider as they forge
ahead in the many decisions they face. Listed below are the most
common questions families are looking to resolve along with suggestions
explaining how to jump those hurdles as smoothly as possible.

Doing a home program will take so much time away from my other
responsibilities, such as my other children. How can I maximize
my time so that I can do this?

Managing a home program places tremendous demands
on your family. This is particularly true when you first begin your
home program as you, your child and your home-therapists (new to
your child) must all experience a learning curve. For you, this
includes managing your child’s schedule, the schedules of your therapists,
purchasing materials and organizing your work area. For your child
this means having many new demands placed upon him. Moreover, this
is all in addition to the demands of your already complicated every
day lives.

Although you recognize that starting a home program may be the best
thing, (there’s more scientific support for home programs than any
other intervention
for children with Autism Spectrum Disorder) it will be laden with
internal challenges and demands. Know in advance that there will
be setbacks and times when you feel it is too much to handle. This
will facilitate your pushing onward (as you would have your child
do) through tough times. Remember the first three months will be
the most complex, just as they are in most beginnings.

After this time period, your child is likely to
look forward to the routine as he becomes comfortable and familiar
with what is expected of him. Your child’s behaviors will become
more positive and will be refocused towards learning. In fact, it
is likely that he will even enjoy the newfound structure. Finally,
you and other family members will all begin to find the routine
comforting. Once your program is in-place, you can look forward
to a household that runs smoother, is more organized and structured,
and allows you to maximize your time and better manage day-to-day
responsibilities.

I really want to begin a home program, but my child already
has so much going on that I feel like I might be asking too much
of him. Should I wait until he’s older and can handle more?

NO, NO & NO!! Imagine not being able to express
yourself or tell others what you want or need, such as when you
need to use the bathroom or feel thirsty. One of the reasons your
child exhibits negative behaviors is because he does not understand
the world around him. Now he is likely to have difficulty understanding
words and concepts as you present them to him and therefore finds
language and communication confusing. A major benefit of a home
program is that by breaking concepts down (an integral component
of home programs) you allow your child to learn how to learn. I
cannot stress the importance of that idea. Soon after you start
your home program, your child’s communication skills will improve
and both you and your child will be less frustrated.

Finally, waiting for your child to get older will allow critical
time to pass and in the long run make your journey more difficult.
The younger your child is when beginning a home program the sooner
he will benefit from that program. Think of it like you would when
learning a new language - the sooner and younger you are when you
begin learning that language, the more likely you are to become
fluent. In fact, your child will be able to handle more because
(as with anything) the more you know the easier it is, and the more
successes you have the more confidence you will have when the next
challenge arises. So, don't worry about asking too much from your
child - he will rise to the occasion.

I’ve made the decision to begin a home program, where do
I begin?

First, congratulations on your decision. It must
feel like quite a challenge to you, but you will see that the reward
of communicating with your child will certainly outweigh the roadblocks
and pitfalls you currently have as well as those you are likely
to continue to encounter on your journey. When choosing someone
to design your home program, it is important to find an experienced
mentor. Typically, professionals involved in designing home programs
include: Speech-Language Pathologists, Special Educational Consultants,
Behavioral Consultants and (some) school programs.

Some questions you may want to ask these specialists include:
• How long have you been designing home programs?
• How many children have you worked with?
• What kind of special training do you have?
• Can you give me the names of a few families you have worked with?
• Do you provide home therapists and if so, how are they trained?
• How do you follow-up on the initial program?
• What happens when I have a problem with my program?
• How do you monitor my child’s progress?

Generally, I have found that the more experience a specialist has
the more likely they will be able to creatively address your child’s
novel and individual needs. My fifteen years of experience as a
therapist has taught me that the more children I see, the more opportunities
I have for growth as a therapist. Furthermore, I have often seen
families that are wait-listed for a number of months because there
is no professional near their home or they simply cannot afford
the challenging costs of a home program. Don't let these issues
impede your child’s progress. Get started in anyway you can. For
example, you can use the book Behavioral Intervention For Young
Children With Autism to get a jumpstart on your home program.

Or, for those families who are interested in a
more structured and comprehensive program that is cost effective
and can be run from your home, Marching Ahead to Progress (MAP)
has been found to be very helpful. This advanced computer program
not only contains a complete home program, but also has video clips
of speech therapists at work and a guidebook demonstrating the techniques
used in operating a successful home program. Beginning your home
program can take some legwork, but you will find it worth your while
in the long run.

Beginning a home program can feel like an overwhelming obstacle.
As a parent, I am concerned that I will do all of this work and
not be able to tell if my child is benefiting from the program.
How can I tell if the program we choose is working?

There are numerous ways to monitor your child’s
progress. I urge you to consider any or all of the following:

Videotape

I cannot stress enough what a wonderful tool this
can be. Think of it like this: When someone is dieting and slowly
loosing weight you generally don't notice it if you see this person
on a daily basis. However, if you went for a month without seeing
the person, the loss would be more obvious to you. Videotape your
child periodically, perhaps even once every 2-3 months. Enjoy looking
back and observing the changes in your child.

Tracking sheets

Monitor your child’s progress by actually tracking
the programs your child is working on. Keep a notebook of the different
goals and a section in the notebook dedicated to listing all of
those goals. Once a month, look back at your program and update
your goals. Make sure you date it, so that you will be able to see
what kind of progress your child has made.

Diary

Keep a diary of your child’s behaviors and skills.
Once a week or even once a month, write a brief description of what
your child is doing. Some parents will want to get very specific
while others will want to make only brief summaries. Ask yourself
what changes your child has made. Be sure to include qualitative
changes, which for some children can be very important. For example,
if when you began your program your child was making only spontaneous
sounds or saying “/m/” to request “more” and a month later he was
saying “/maw/” that would be a qualitative change of tremendous
importance.

Does it matter where we do the home program?

Absolutely! You should have a specific work area
set aside for your child. Make sure the area is lacking in distractions,
such as phones, television, radio, other children playing, toys
strewn all over, etc. Also, have your child sit at a small table
with you during the work time to help keep him focused during your
session. Keep in mind that whether you are using a book, the MAP
program or an individually designed program, little changes in your
surroundings can make a huge difference in your child’s ability
to focus and facilitate learning, so don't overlook these seemingly
small modifications.

Hiring a home therapist sounds very expensive. Can I do the home
therapy myself?

This question is asked a lot. Some parents, especially
those with no other children (or older kids who are in school) feel
that they have the time. However, a lot of parents are concerned
about their efficacy with their child, particularly if their child
happens to tantrum a lot or exhibit negative behaviors. It is easier
for someone who is not the child’s parent to withstand a lot of
behavior when the child does not want to sit down, etc. Successful
initiation of a solid home program can be difficult, time consuming
and emotionally draining. We recommend that you take on this task
with as much help and support as possible.

Most families conducting a home program also hire “home therapists”
who are generally graduate students in related fields such as speech
pathology, special education, and psychology. These students must
be trained so the program is consistent amongst the people working
with your child. This training should be offered as part of your
home program. For instance, the MAP program does train a "home
therapist" on the techniques used in a home program. As a guideline,
a “home therapist” is paid between US$8 and US$13 per hour, depending
upon experience and what part of the country you live in.

Where can I find a “home therapist”?

First, ask whoever designed your home program
if they have a list of “home therapists” in your area. My Center,
National Speech/Language Therapy Center, provides on-going training
and has established relationships with graduate programs and students.
In addition, you can contact the local graduate school in your area
and ask if there are students available or a place where you can
post a job ad.

Make sure when you interview people that you stress the fact that
they will be working with your special needs child and that it is
imperative that they be responsible and intend to work with your
child for an extended time period. This is not a job to do over
winter break! I have encouraged families to use a contract with
their “home therapists”. This helps to create an emotional bond
and commitment to you and your child. Remember to check references
just like you would with anyone you would employ.

“Intensive” therapies were recommended for my child. What does
“intensive” therapy mean? A couple of hours? More? How many hours
per week should my child be doing the home program?

An “intensive” therapy program is using your time
and your child’s time to maximize progress. In other words, your
child should be receiving therapy as frequently as possible for
both his benefit and your own. Here are guidelines as well as some
of the benefits for allocating frequent sessions to your child’s
home program.

The frequency and repetition of new concepts at
a young age enables a child the opportunity to recall information
and store it permanently into memory. If too much time lapses (and
this could mean even a day in some cases) between two sessions,
there is a distinct probability that it will take your child longer
to master certain concepts.

The more sessions your child has almost certainly
dictates how much your child will learn and how quickly he will
progress through a home program. If your child is meeting for only
five hours a week, chances are you will have to cover the same material
repeatedly and feel as if the program is moving slowly, whereas
if your child is meeting for 30 hours per week you would certainly
see greater progress sooner.

Children on this spectrum like routines. The more
often you meet in a session the more likely your child will cooperate
when it is work time. Remember the foreign language analogy– you
will learn at a greater rate if you are exposed with greater frequency.
The most rewarding journeys take the most commitment and time to
complete.

I can’t imagine ways to motivate my child to work. How can a home
program be successful if my child won’t sit still or attend?

Over the years, I have read countless books on
motivation and reinforcement. The one common theme that I have noticed
and seen first hand regarding all children is consistency! All children
will test you to see how far they can push before a parent puts
the proverbial foot down. Special needs children are no different,
perhaps with the exception that they may not recognize when that
foot is being put down (your consistency will allow them to learn
this). Regardless, your child will still be looking for guidance
and reinforcement from parents and caregivers.

The key to helping your child learn can be summed up in one word
– reinforcement.
If you reinforce your child well you will be able to successfully
shape new behaviors and teach new concepts. Having a well-designed
home program is simply not enough. If you do not properly reinforce
your child your program is bound to fail.

A couple of other thoughts about reinforcement: reinforcing positive
behavior or performance for a child with Autism Spectrum Disorder is to give the reward
immediately following the action. For example if you say, “Touch
truck” and your child does what is requested, then reward immediately
and with enthusiasm.

Provide reinforcement every single time he does
it right, especially in the early stages of a home program. For
some children a hug, tickle or an enthusiastic “Hurray!” is a great
motivator. Other children might want a food item or special toy.
Provide reinforcement every single time he attempts to do it right,
especially in the early stages of a new program. You want to ensure
your child learns to equate trying to succeed with succeeding on
some level.

• If you are using a food item to reinforce your child, make sure
it is a small quantity, such as one grape, one chip (even a piece
of one) or one M&M. Vary your rewards. Children become bored
with the same thing. Over time require your child to do more before
offering the reward. Be overtly proud and enthusiastic. Grade your
reward. In other words, a better response gets a greater reward.

Always keep in mind that this is very hard work for your child and
that your reward system is critical to your child’s learning. We
suggest that you read up on ways to make rewards meaningful. (For
more detail on how to reward, motivate and reinforce your child
we refer the reader to the “rewards” section of the MAP program
where video clips can assist you.)

What are some ways I can save on materials cost?

Home program materials can be expensive, but there
are ways to save on the materials. Here are some that other parents
have used:
Use Dollar Stores! They usually have party blowers (oral motor skills);
candies and chips; toys for young children; and inexpensive storage
bins to keep your materials stored.
Visit garage sales and flea markets. A lot of great buys can be
found at these sales at a fraction of the cost of new store bought
toys.
Make them at home. It may be worth your while to cut out and laminate
pictures-- they are less expensive than the cards you purchase,
as well as equally functional.
Network with other parents. Children can become bored quickly with
toys, so check with friends and swap toys.

In considering and running a successful home program for your child
you are likely to encounter many of the aforementioned challenges.
Every journey has unforeseen roadblocks and forks in the road. All
you can do is prepare as best as possible so that if and when you
encounter a roadblock, you will be able to problem solve and discover
an alternate route. Remember to minimize the difficulties, maximize
the (sometimes) small feats, and take each leg of the trip one step
at a time!

Sabra Gelfond-Ingall, M.A. CCC-SLP is the Executive
Director of National Speech/Language Therapy Center in Bethesda,
Maryland. Ms. Ingall has worked with children on the autism spectrum
for over 15 years, as well as being the initiator and one the driving
forces behind the development of the MAP computer program (written
for families and caregivers of children on the autism spectrum).

Click here for the full
range of autism and Asperger's fact sheets at www.autism-help.org
Click here to read
a fact sheet about creating home-based programs

This autism and Asperger's syndrome information
is reproduced with permission and copyright remains with Sabra Gelfond-Ingall,
M.A. CCC-SLP, Executive Director of National Speech/Language Therapy
Center in Bethesda.